The human genome project has spent some 5% of its budget on studying the ethical, legal and social issues surrounding the availability of genetic information. It has identified many issues but come up with very few answers. The issues include:
* Who will have access to genetic information: employers, courts, schools, adoption agencies, law enforcement agencies, the armed forces?
* How much genetic testing of children will take place before they are placed for adoption?
* Should genetic data be used for identification in immigration and paternity cases, settlement of estates, personal injury litigation, domestic relations and forensics?
* Who owns and controls the genetic information: the individual, the researcher or the corporation that paid for the research? (John Moore had his cancerous spleen removed in 1976. Despite Moore signing a form stating that his spleen would be destroyed, the doctor cultured some of his cells and through this found an anti-cancer drug which subsequently made US$3 billion for the pharmaceutical industry. Moore was described by his doctor as a goldmine, but in 1990 the Californian Supreme Court ruled that Moore could not obtain any monetary benefit from the use of his cells, even though they had been obtained illegally. The biotechnology industry breathed a sigh of relief.)
* How does information that an individual is a disease gene carrier affect that individual psychologically, and society's perception of her/him?
* Should genetic testing for diseases be performed when no treatment is available? (There is as yet no cure for the vast majority of genetic diseases.) Should parents have the right not to have their young children tested for adult onset of a disease? Should the newborn be compulsorily tested? Should there be pre-marital testing? What about occupational testing?
* Are genetic tests reliable and interpretable by medical experts? (The genes BRCA1 and BRCA2 were thought to be major players in the development of breast cancer at the time of their discovery. Now it's known that only 5% of breast cancers are caused by these genes and it's unclear just how relevant they are in the development of the disease.)
* How reliable and useful is foetal genetic testing? There have been cases where women have been advised to abort a pregnancy because of ultrasound results, only to find that the foetus was perfectly normal. Do health care personnel properly counsel parents about the risks and limitations of genetic technology?
* What is "normal" and what is a disability or disorder? Who decides? Are disabilities a disease that need to be cured?
* Is the use of genetic enhancement valid for characteristics (such as weight) which have nothing to do with treating or preventing a disease?
* Who will have access to these technologies and who will pay for their use: the state or just wealthy individuals?
* Will governments abrogate their responsibilities to underprivileged people on the grounds that their failures/faults originate in their genes?
* If the conduct of some individuals stems from their genes, can this be considered a defence, or at least mitigating circumstances, in criminal cases? (Until now, criminal law has rested on a hypothesis of free will.)
* Where does the process of medical elimination of "defective genes" begin and end? What is considered acceptable diversity?
* Should defendants in personal injury cases be allowed to compel victims to undergo genetic testing to determine what their life expectancy might have been before the accident?
Rational answers to these questions cannot be found in an irrational social system driven by greed and private profit rather than by collectivity and meeting human needs.